On Dec. 15, 2013
I wrote Alberta's Health Minster Fred Horne regarding my spouse, who
has idiopathic pulmonary fibrosis (IPF) and also tweeted about it.
Our friends had written to the Minister on my spouse's behalf and all
received an identical form letter, aka boiler plate, in response -
albeit a well crafted, comprehensive boiler plate - that assumed the
patient had written.
The replies also ignored several other key points made in the letters,
including the fact that the writers knew the
Canadian Drug Expert Committee (CDEC) had recommended against public
funding for Esbriet.
In my letter to Minister Horne I asked him to 'cut the B.S.' and
respond directly to 3 questions.
in a letter dated 12 Mar. 2014 I received Minister Horne's reply. And
guess what? He did answer forthrightly and graciously acknowledged our
Please ‘cut the crap’
(sorry for being direct, but my spouse’s remaining time on planet
is at stake) and reply as honestly as
you can, given political realities, to these questions:
1. How likely is it
that Alberta will fund EsbrietTM without CDEC or Alberta's
’Expert Committee’ recommending it?
expert recommendations that support coverage, it is unlikely Alberta
will provide public funding at this time.
2. Where can I access
Expert Committee on Drug Evaluation and Therapeutics report on EsbrietTM? Or does it more or less rubber stamp the CDEC
Answer: Because CDEC
recommended not to list the drug, ECDET decided to support CDEC's
advice. There is no ECDET report.
3. What are key
considerations for who gets funding under Alberta’s Short Term
Exceptional Drug Therapy (STEDT) program? I’m
trying to identify if a 68 year old with IPF has even a chance of
qualifying and under which circumstances.
Answer: Alberta is
presently considering the possibility of a product listing agreement
with the manufacturers of Esbriet.
One of the parameters of the STEDT program is that no coverage can
be provided when a drug is under review via pan-Canadian processes.
If I interpret Minister Horne's reply correctly:
Unless CDEC recommends Esbriet
funding, Alberta won't fund it.
Alberta's expert committee (ECDET)
accepts (rubber stamps) CDEC's decisions.
Forget about STEDT unless a drug
is approved for public funding by CDEC OR Canada's provinces
negotiate what they deem a reasonable cost for Esbriet.
Twitter Account used for IPF and Esbreit:
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